Moyamoya.com Forum - Print Page

We are very excited to announce that the 2012 Moyamoya.com Gathering will be held June 21-24, 2012 at the Great Wolf Lodge located in Kansas City, KS.

Great Wolf Lodge is located on the Kansas side of Kansas City. It is one of the premier water park resorts in the country with locations in 11 cities around the country and a fantastic place to have a family get-away. You can view more at the Great Wolf website (http://www.greatwolf.com/kansascity/waterpark) and view a .pdf brochure by Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

. All of the Great Wolf rooms are suites and sleep at least six (6) people. You can view a .pdf of the floor plans by Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

.

We will be offering a full breakfast buffet Saturday morning and a Kansas City BBQ buffet for our main Gathering function Saturday evening. Both menu's are listed later in this post.

Room rates will be $129 Thurs-Fri, $149 Sat and $129 Sun. Five (5) water park passes are complimentary with the price of the room. Additional rooms Tue-Wed (pre-event) and Mon-Tues (post-event) will be available at the group rate of $129.

Gathering registration is offered for both adults (ages 12 & up) and kids (ages 4 to 11) in two different categories: "full registration" and "meal only". Full registration includes an official 2012 Moyamoya.com Gathering t-shirt and a souvenir goodie bag with Moyamoya.com and other items ($75 adults/$50 kids). Meal only registrations include the Saturday buffets only ($55 adults/$30 kids). Alcohol will be available via a cash bar for the Saturday evening buffet.

Note: You MUST register for the event (with or without meals) to be part of our weekend. We will be handing out tickets which will need to be turned in at the door of the meeting area for food and for Dr. Mileciwz's presentation.

Room reservations and Gatheirng registration must be made separately.

Room reservations: Room reservations can now be made by calling the Great Wolf Lodge at 1-800-608-9653. You must identify our Moyamoya group by giving the reservation specialist our group code: 1206moya.

Gathering registration: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

must be made through the Moyamoya.com store Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

. Choose the age specific and type of registration and add to your shopping cart. Registrations can be made using any major credit card or your PayPal account.

Great Wolf Lodge is located in a growing area of the city with many exciting attractions. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

, Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

baseball stadium, Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

soccer stadium, Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

and countless restaurants including the exclusive Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

are all located within ONE mile of the Lodge.

BREAKFAST BUFFET MENU

Seasonal Sliced Fresh Fruit Display
Fluffy Scrambled Eggs
Hickory Smoked Bacon
Sausage Links
Breakfast Potatoes
Assorted Breakfast Pastries and Muffins
Assorted Chilled Juices
Regular and Decaffeinated Coffee, Tea and Milk

DINNER BUFFET MENU

Fresh Green Salad with Toppings and Dressings
Potato Salad and Coleslaw
House Smoked Brisket
House Smoked Chicken
Barbecue Pork Ribs
Baked Potato Bar with Cheddar Cheese, Sour Cream, Bacon Bits and Scallions
Corn on the Cob or Seasonal Vegetable
Kansas City Style Baked Beans
Fresh Sliced Watermelon
Apple Cobbler

We hope you will be able to join us in 2012 for our most exciting Gathering yet!

Register here: http://www.moyamoya.com/khxc/index.php?app=ccp0&ns=catshow&ref=registrations

Jan 5, 2012 - I am VERY excited to announce that Dr. Dianna Milewicz and her team will be joining us again this year in Kansas City! You may remember that her and her team visited with us in San Antonio in 2007 when they had just started their research.

Dr. Milewicz and her team have made some very important discoveries recently including information about possible medical therapies to prevent or reverse the disease! That's HUGE!! Here is a quick highlight of this exciting news:

"Moyamoya disease can occur in more than one member in a family, suggesting that alterations in genes causing Moyamoya disease may be passed through families. Dr. Dianna Milewicz, Director of the Division of Medical Genetics at the University of Texas Health Science Center at Houston, will discuss the genetic predisposition to Moyamoya disease and talk about the three genes that have been identified to cause this condition. She will address what genetic testing should be done in patients with Moyamoya disease and what the results of this testing means for other family members and their risk to develop Moyamoya disease. Finally, one recently identified gene is beginning to provide information as to the cause of Moyamoya disease and provide information about possible medical therapies to prevent or reverse the disease."

Please make plans to join us June 21-24, 2012 in Kansas City for this year's Moyamoya.com Gathering and share in this incredibly exciting information!

Register here: http://www.moyamoya.com/khxc/index.php?app=ccp0&ns=catshow&ref=registrations

See you there!!

DJ

Exciting!! Looking forward to this....only 11 months to go!

I'm super excited. Seeing how this is only 30 minutes from where I live...I had to read it a couple of times to make sure I was believing what I was seeing...

Reagan

Reagan wrote on Jul 25^th, 2011 at 10:31pm:

I had to read it a couple of times to make sure I was believing what I was seeing...

;D ;D ;D

So I take it you'll be there??

I'm excited too!

-Shari

This is great news. I am only six hours away. Hope to be there. Will be the first one I have gone to.
Skay

We may not be able to attend the event due to financial constraints but would be looking forward to hear back on the outcome and information shared. Hope fully this would change the future treatment roadmap of our 10yr old son and our lives as well.

bir (india)

Kyle, Brett & I are registered. Kyle is very excited - maybe he's remembering all the young ladies he met in San Antonio in 2007 and hoping some of them will be in KS. - will have to keep an eye on him now!! :D
We are looking forward to seeing you all - Thanks DJ & Stephanie for organizing it! The kiddos are going to LOVE this resort!
Sue

WHAT NIGHT WILL THE SPEAKERS MAKE PRESENTATIONS ON RSEARCH? WE ARE ONLY GOING TO BE ABLE TO COME FRIDAY AND SATURDAY NIGHT

Jay,

We haven't talked about specific times for the presentations yet but Dr. Milewicz will speak sometime Saturday. In the morning after our breakfast buffet or shortly after the dinner buffet are the two options. I will have to get with her and see what her travel plans are before we set any firm times.

Hope this helps,

DJ

My son being so far post diagnosis & surgery, I only think about it about every now and then. And I come here even a bit less often.

This is the first I had heard of moyamoya being genetic!! I am going to have to see if I can talk Matthew into attending. Or I might just attend without him!

Kim

We'd LOVE to meet you Kim!

DJ

Got the wristbands that will be given out to everyone who registers for this year's Gathering!

Cool!

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Kim, I hope you can come & bring Matt! my son is 15 yr post dx/stroke & now almost 19. I think they would be a huge inspiration to the younger ones. I know DJ, and others were inspirational to Kyle when we went to the gathering in 07.
DJ, the bands look great!

DJ,
Do you know what activities are planned for Thursday and Sunday? I have registered for the gathering, but I haven't made hotel reservations yet. Still trying to figure out if I will fly or drive and need to know time restraints to figure it out.
Thanks,
Tracey

tuknits wrote on Apr 9^th, 2012 at 1:54pm:

Tracey,

We don't really have any plans other than meeting with other families. We will have a hospitality room to congregate in the entire weekend with refreshments and lots of conversation. We'll probably spend quite a bit of time in the water park Thursday and Sunday! ;)

Also, don't forget about all of the other fun stuff there is around the Lodge (some of which are listed in my first post) and the Cardinals will be in town Fri-Sun if you enjoy Major League Baseball.

Hope this helps,

DJ

Designed the t-shirts for the folks that paid for full registration for the Gathering. Hope you like them!

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Folks, we talked to the sales manager at Great Wolf Lodge today and they are less than 20 rooms from being SOLD OUT for the weekend of our Gathering. If you are planning on coming to Kansas City and staying in the same hotel where we will be holding our function... make your room reservations NOW before all of the rooms are gone.

Hope to see you in June!!

DJ

Just submitted our registration, ordered Royals tickets, and got the last suite available under the MM gathering discount (at least according to the GWL website)...life is good! And we are excited to be attending our first-ever MM gathering! :D :) ;D

Yunnanababy - we are going too! Excited to meet you and your kiddos.

Jody (Lina's Mom)

This news just made my day Jody! And the girls will be excited to hear it, too. Looking forward to meeting your family.

Jody,

I sent you a private message thru the MM site. If you don't get it, please email me at yunnanbaby@gmail.com. I'd like to communicate privately prior to the gathering.

Best,

Jenn

Our room block for the Gathering is full. We are talking with the Lodge to try and get some additional rooms added. We will let you know as soon as we hear back... hopefully tomorrow.

Please don't forget you also need to "Register" for the Gathering which is different that making a reservation at the Lodge. Registration fees go towards the food, hospitality room, snacks, etc, etc. There are currently 5 families that have made hotel reservations (totaling 21 people) that have made hotel reservations that haven't yet registered. Please get your registrations in as soon as possible. Thank you.

DJ,
Is Dr. Scott planning to be there too?
amit

Amit wrote on Jun 12^th, 2012 at 1:19am:

DJ,
Is Dr. Scott planning to be there too?
amit

No, Dr. Scott will not be there this year. Dr. Dianna Milewicz will be the only speaker.

Moyamoya.com Forum
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl Meetings and Gatherings >> 2012 Moyamoya.com Gathering >> 2012 Gathering details are here! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383 Message started by DJ on Aug 7^th, 2011 at 6:16pm